Monday, March 20, 2017

The Day I Decided To Ride The Elevator Sitting On My Butt

Being Chronically Ill is not easy. It's a constant fight. When that sickness is an autoimmune disease, it's that much harder because the illness itself is actually attacking our body. We are constantly tired from fighting. And to top it all off, autoimmune diseases can cause their own special kind of weakness and fatigue. So much so that there are days we don’t leave the house. There are days we don’t even get out of bed. But what happens when one of those days coincides with one of our many doctor’s appointments? Especially if it’s one we can’t, or don’t want to cancel.

This is the story of one of those days.

First let me say that we never know when these days will hit. There is no rhyme or reason to how our diseases work. I feel like there are little aliens running amok in my bloodstream purposefully crashing into stuff to set off my white blood cells. Then they sit back and watch the show while I deal with aftermath. Anyway, since we can’t predict when our little aliens will act up, we all go to bed the night before an appointment crossing our fingers and toes that we will wake up feeling well enough to get ready, maybe even shower, and get ourselves to the doctor of the day.

That’s how this story begins. And where it quickly started to slide downhill. For one thing, as much as my disease can cause mind numbing fatigue, it can also cause ‘kitty brain’. You know: racing around in the middle of the night for absolutely no reason what so ever! And I take a sleep med. Go figure! But once a kitty starts going nuts around the house, there’s no stopping them. (Ask a cat owner) So, I got no sleep, though ironically, my three cats did.

As my appointment was later in the day. Apparently, the one thing I can’t do is nap to make up for lost sleep, so I rested. But sometimes, even while resting, I can feel the weakness growing in my muscles. It’s an annoying feeling almost like oversensitive skin but deeper. So now I’m tired, my muscles are annoyed, and I still have an appointment to get to.

At this point, showering and stretching would be my go tos for relief. But showering is a double edged sword as it can sap strength as much as it can perk you up. Then again, I hadn’t showered in 4 days. (No judgement, it happens!) It was a necessity. So I got it done and left for the appointment. Still very tired. A bit out of breath. But clean and wearing actual clothing. I even managed some make up.

Here is where I mention that I own a cane and that I took it with me. I don’t like falling. Better safe than sorry right? “Sure.” (Said with much sarcasm) You can prepare all you want but if your cat darts in front of you, you’re gonna to trip over her.

Which is kind of what happened on the elevator. When it jerked to life to take me to the second floor, my legs gave up for the day. I went straight down, and I’m tall. Even my cane wasn’t any help. Fortunately, I have a very strange sense of humor though I wonder what people would have thought seeing a 6’1” tall woman sitting on the elevator floor laughing hysterically!

I ended up sitting there for a good ten minutes or so. I didn’t have the strength to get up and there were no people around. While I sat, I tried to figure out why, when I fall in front of people, I get angry, and when I fall alone, I don’t. It’s not necessarily embarrassment, it’s anger. Am I angry at the disease? Its effects? My loss of control? And wouldn’t all that be the same whether in front of people or not?

I now think it's the fact that after all I did to get myself here, the rest, the stretching, the preparation, I still fell down. And when that happens in front of people, I feel helpless. Alone, I can do what I need to to recover, like just sit there for ten minutes. But around people, there’s a fuss that I really don’t want to deal with. There are also questions I don’t want to bother answering because I don’t want to try explain my disease at that moment or deal with the fact that there will probably be people there who won’t believe me. But on the elevator alone, I got to sit and recover as long as I needed to. I even got to laugh. Whether it was at the fact I had so much go wrong that day, at how pathetic I felt, or how hysterical I must have looked, I was laughing-which never happens when people are around. And let’s face it, it’s good to laugh at ourselves. Even when we are sick and miserable.

About Me

Born and raised in Rochester NY, I was diagnosed with Sjogren’s 4 months after my second son was born. My kids are now 21 and 23 years old. I have since developed MCTD, Inflammitory Arthritis, and Fibromyalgia. I have raised my kids, worked at my career for over 30 years, and have been a wife to her husband of 26 years while being diagnosed with an autoimmune disease for 21 of them. I currently writes from the heart about these experiences while wrangling our one rescue dog and three rescue cats.